Volume 22, Issue 2 Spring 2019 - Spastic Paraplegia ...
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Volume 22, Issue 2 Spring 2019 www.morganswonderland.com
In This Issue
President’s Letter............................................. 3
New Board Member, Carina Thurgood............ 4
Connections
Volume 22, Issue 2 - Spring 2019
Ottawa Ontario Connection............................. 4
SPFIllinois Connection.................................... 4 The Spastic Paraplegia Foundation Inc. (SPF) is
a national, not-for-profit, voluntary organization. It
Synapse Survey Results.................................... 5 is the only organization in the Americas dedicated
to Primary Lateral Sclerosis (PLS) and Hereditary
Fundraisers Spastic Paraplegia (HSP).
California SPF Walk ‘n Roll-athon................... 6
Synapse Editors
Potato Pants: Helping to Fund ........................ 6
John Staehle........................................Senior Editor
HSP/PLS Research
Malin Dollinger, M.D.......... Medical/Research Editor
2019 Annual Conference, San Antonio
Published three times a year, Winter, Spring and
2019 Annual Conference sponsors................. 7
Fall, for the HSP/PLS community. It is also available
Agenda............................................................ 8 online at www.sp-foundation.org
Presenters....................................................... 9
Overflow Hotel Information.............................11 The SPF is a non-profit 501(c)3.
To Do and See in San Antonio........................11 Tax ID # 04-3594491
Conference Registration Form...................... 19 Combined Federal Campaign CFC #12554
General Interest Send Correspondence & Donations to:
Cane or No Cane?......................................... 12 Spastic Paraplegia Foundation
Where Are You?............................................. 12 1605 Goularte Place
KoolKape....................................................... 12 Fremont, CA 94539-7241
A Synapse Archive......................................... 13
Contact the SPF at:
Medical & Research (877) 773-4483
Surgical Anesthesia in HSP and PLS............ 14 information@sp-foundation.org
The Importance of Gene Testing................... 16 or www.sp-foundation.org
Living with HSP and PLS SPF Board of Directors:
Travel Turmoil................................................ 17 Frank Davis, President
Linda Gentner, Vice President
Rare Patient Voice............................................ 20 Jean Chambers, RN, Secretary
David Lewis, Treasurer
Members: Corey Braastad, PhD, Hank Chiuppi,
SYNAPSE APPEAL John Cobb, Tina Croghan, Greg Pruitt, Jim
Synapse costs lots of money to print Sheorn, Carina Thurgood, Mark Weber, Esq.,
Jackie Wellman
and mail, and we need your help to
keep it going. If you or a loved one SPF Medical Advisor:
enjoyed this issue and would like to John K. Fink, M.D., University of Michigan
support it, please use the enclosed Disclaimer: The Spastic Paraplegia Foundation does not endorse
products, services or manufacturers. Those that are mentioned in
response envelope to make a donation. Synapse are included for your information. The SPF assumes no
liability whatsoever for the use or contents of any product or service
Every little bit helps. mentioned in the newsletter.
2
Letter from the President
Dear Friends, will be to interview a panel of young neurologists about
I have a wide variety of things I PLS as part of the whole presentation. This symposium
want to talk to you about today. will do wonders to create an energy about PLS knowledge
First of all, I want you to know that and research among the whole community of neurological
a lot of exciting things are going on doctors worldwide and is long overdue. Again, Dr.
right now at the Spastic Paraplegia Mitsumoto will tell us all about it and other PLS work
Foundation. they are doing at our Annual Conference in San Antonio
We are making final decisions on in June.
what research to support for the next Dr. Corey Braastad, a very valuable member of our Board
two years. The manager of our all-volunteer Scientific of Directors for many years, is a PhD in Genetics and
Advisory Board, Dr. Martha Nance, has turned in the will be updating our audience about genetics. Corey is
reports from all of the scientists that have reviewed and usually one of our most popular speakers because he is
graded the research proposals submitted this year. There very good at explaining genetics in an entertaining and
are some really exciting and promising projects soon to be understandable way. He puts a lot of work into making
underway. In May or June, you will receive our Annual sure that his presentation is up to date and very relevant
Report where I will tell you what I can about recent and for our audience.
future research progress. Our researchers ask that we keep We are also honored this year to have the president of our
their projects confidential until they are complete so I can’t sister HSP organization in Australia, the HSP Research
give you all the details, but I do want you to know that they Foundation, Frank McKeown. Frank will speak to all
are all state of the art and on the cutting edge of the most of us about the exciting research they are doing with Dr.
promising and exciting find-a-cure research possible. Allan McKay-Sim who won “Australian of the Year” in
I also want to remind you again that every person that 2017. Our SPF is a major sponsor of this cutting-edge
works for the Spastic Paraplegia Foundation does so on research and it will be exciting to get an update on the
a voluntary basis. Our only costs are printing, postage progress taking place.
and our Annual Conference (which is largely paid for by Our most popular speaker is always my good friend and
Conference Registration fees and sponsors) so almost our medical advisor, Dr. John Fink. Dr. Fink has the
every penny you donate goes to this incredibly valuable, fortitude to stand up in front of all of us who are so eager
cure-seeking research. to learn and answer any and all questions. I honestly think
Speaking of our Annual Conference, this year’s event, he really enjoys doing so.
June 21 & 22 in San Antonio, Texas, will be one of our We also have times planned for break-out sessions where
best conferences ever. If you look at our list of speakers different groups – people with HSP, people with PLS,
this year, you will see that each one is a world leader in youth and caregivers – can meet separately and ask each
HSP or PLS research and knowledge. For the first time, other questions and share. Many people learn more from
this year we have both Dr. Craig Blackstone and Dr. Peter their fellow travelers on this journey than from the experts,
Baas on the agenda. I have been reading and following so don’t miss this.
their long list of research reports for years and years and The setting this year, in the historic and fun vacation city
it is going to be very exciting for me to finally meet both of San Antonio, will certainly be memorable. You will
of them. definitely, “Remember the Alamo!” There are numerous
What’s more, Dr. Hiroshi Mitsumoto will be letting places to visit in San Antonio that you will read about
all of us know about the PLS Medical Symposium that elsewhere in this newsletter. Most of all, you will love the
will have taken place May 3-4, 2019, in Philadelphia, friendly people, the Hispanic heritage and the unique small
PA. This symposium, exclusively about Primary Lateral town feel of the sixth largest city in the United States.
Sclerosis and partially sponsored by the Spastic Paraplegia I really look forward to seeing you in San Antonio.
Foundation, is a meeting of many of the top upper-motor Sincerely,
neurologists from all over the world. It is mid-April as I
write this letter and I am looking forward to attending and
being one of the speakers at this Symposium. My role
Frank Davis
Frank Davis, President
3
New Board Member, Carina Thurgood
Carina Thurgood is the Founder and CEO of The Maddi Foundation, a UK based charity that
focuses on medical research for SPG15. She began this work after her teenage daughter,
Maddi, was diagnosed with Hereditary Spastic Paraplegia. Since the beginning, Carina
has dedicated her time to learn more about the condition and, with her strong fundraising
drive, has been able to help finance relevant research projects; one of which is The Maddi
Foundation partnering with SITraN at Sheffield University England. Her insight special
fundraising skills will be a welcome addition to the Board. Her application to be a member
of SPF’s Board of Directors was approved by the Board in their March meeting.
Previously Carina was a successful businesswoman and a commercial florist working in
some of London’s Top Hotels including the world renowned Claridge’s. She lives in Essex, England, some 30
miles North East of London, with her family, 2 daughters Madeleine and Alexandra and husband Paul.
Connections
Ottawa, Ontario Connection it is. Many had examples of different doctors at many
locations giving various conclusions at different
By Julie Ann Samson, SPF Ambassador- Ontario
times. Specific adaptive equipment recommendations
On Saturday, April 6th, we had our second get together were made for canes, ramps, lifts, and power chairs.
in Ottawa, Ontario, Canada. We spent a few hours Also discussed was the need to know how to use them
together and did a lot of chatting, and comparing safely and if you don’t, how you can hurt yourself or
different aspects of our lives and conditions. There do damage to the house. There was discussion of high
were 4 HSPers, 1 PLSer, and 2 spouses. We are cost of drugs. One person had found a high cost of one
planning on getting together again on October 19, drug, Neudexta, could be reduced by a local pharmacy
2019 and continuing to do this twice a year. compounding it from two less expensive component
drugs. We also discussed the need for jobs and
opportunities that HSPers/PLSers can apply for and
do. Exercise for the tongue were also demonstrated to
help with PLS speech problems. An overall agreement
was that laughter yoga was helpful. Do a hearty laugh
at something everyday.
Pembe Hande Ozdinler, Ph.D., Neuroresearcher from
Northwestern, explained what her lab is working on:
Left to right: Brian Green, Kathy Selst, Tara Tucker, Pieter Selst,
the open source genetic lines they had developed;
Jean Brunet, Julie Ann Samson. Photo taken by Allan Ewen.
how the central cortex is involved with our diseases,
communication within the cells and mitochondria;
SPFIllinois Connection, May 4, 2019 the findings and growth of knowledge is exponential.
By Sid Clark, HSP and Hank Chiuppi, PLS, However, stem cells’ health benefits, touted by some
Illinois SPF Co-Ambassadors medical applications, have unclear definitions. She
Last week the skies were a dark battle ship gray with said not to believe all you read or hear. She also
buckets and buckets of rain. Next week we are forecast touched on the ethics of gene editing.
to have storms and more soaking rains. On Saturday, After the meeting, there was time for socializing. One
May 4, we had our 20th SPFIllinois connection under person’s daughter married recently and she brought a
beautiful bright blue skies!! picture book of the beautiful wedding. Another ran
With 25 attendees, we went around the room and and completed a 5K giant inflatable race.
discussed a wide range of items. including how long it Thanks to the many that brought treats to share.
takes to make a diagnosis of HSP/PLS and how unsure Continued on Page 18
4
member and select “Synapse (printed copy)” only.
Synapse Survey Results This will alert the SPF database manager to add
By John Staehle, Senior Editor, Synapse your name to the Synapse mailing list. Alternately,
First of all, I want to thank all of you who took a few you may type the following in your browser,
minutes in January to complete the Synapse Survey https://sp-foundation.org/news-resources/stay-
we conducted. Your responses will help us improve informed.html to get to the Join/Subscribe page.
the quality and the content of future issues of Synapse. There were several suggestions to have more articles
There were many excellent comments that we will use about coping with the most common symptoms and/
to guide our efforts to give you, the readers, a newsletter or complications associated with HSP or PLS. The
you will want to read cover to cover. best sources for these articles are you, the people
Earlier this year a survey was sent by email to more than who have experienced the impact these symptoms/
2,400 people on the SPF roster who identified with HSP complications have on their daily living and overall
or PLS. We received 147 responses, mostly within 3 lifestyles. Sometimes these are very personal and there
days of the survey’s distribution. Some of the significant is a reluctance to discuss your “personal problems” in a
results were: newsletter like Synapse, but if you have solved one of
• 24% of those that receive printed copies of Synapse these problems, sharing your solution with others who
also read it online; have HSP or PLS may resolve a troublesome condition
• 68% would like Synapse to be published quarterly; that has affected their quality of life. If you wish to
• The top 4 most-liked types of articles are Medical & remain anonymous, specify that when you submit your
Research, Features, General Interest and Personal article to me and your name will not be used in the
Triumphs; newsletter article.
• 58% would be willing to pay an annual subscription There were a few comments regarding the high-quality
fee for 4 mailed issues per year; paper used for printed copies and the possible subscription
• Nearly ⅓ of responders read back issues of Synapse. fee for a printed and mailed quarterly newsletter, IF AND
There were also other comments related to the availability ONLY IF a subscription fee is established. The Winter
of the newsletter. Here are instructions for accessing 2017 issue was the first to have nearly all pictures and
Synapse on the website, for removing your name from graphics printed in color. High-quality paper insures the
the mailing list and for adding your name to the mailing color pictures are printed with no bleeding across color
list. boundaries. The weight of the high-quality paper stands
up to the rigors of bulk mail handling better than lighter-
• To Access the Online Version of Synapse: Go weight paper. As for the subscription fee, there is none
to the SPF website, www.sp-foundation.org and right now. It’s an option being explored to offset the
click on the synapse newsletter link on the top cost of printing and mailing each issue. In 2017 and
banner. Alternately, you may type the following 2018 we printed a total of 6 issues at an average cost of
in your browser, https://sp-foundation.org/news- $3.11 per copy, including postage, mailing services and
resources/newsletter.html. the donation envelopes stuffed in each copy. This cost/
• To Remove Your Name from the Printed Copy copy does not include the graphic artist’s time to prepare
Mailing List: Go to the SPF website, www. the issues and get them ready for production, a cost the
sp-foundation.org and click on the join us link publisher generously donates. Subscription fees will be
on the top banner. On the Join/Subscribe page, set to recover only our actual Synapse cost/copy and that
complete the required fields (marked with an *) will depend on the total costs and the number of copies
even if you are a current member and then select printed and mailed.
“Synapse (online version)” only. This will alert Many of the questions and comments submitted by you
the SPF database manager to remove your name may be answered by logging on to the SPF’s website,
from the Synapse mailing list. Alternately, you www.sp-foundation.org and clicking on “Resources.”
may type the following in your browser, https:// There you will find a multitude of information about:
sp-foundation.org/news-resources/stay-informed. current studies seeking participants; directories of doctors
html to get to the Join/Subscribe page. and SPF state ambassadors; government aid programs;
• To Add Your Name to the Printed Copy Mailing helpful links to employment resources, genetic testing,
List: Go to the SPF website, www.sp-foundation. travel and relationships; HSP & PLS forums; patient
org and click on the join us link on the top banner. organizations for other neurological conditions; self-
On the Join/Subscribe page, complete the required help guides; the Synapse newsletter archive; and the SPF
fields (marked with an *) even if you are a current Patients Insight Network.
5
Fundraisers
Potato Pants
Helping to Fund HSP/PLS Research
Now is the time. As James Brown said, Get Up Offa
That Thing (go ahead...look it up on YouTube...I dare
you not to move!). For the 3rd year in a row, Potato
Pants have made their presence known at the Vienna
California Virtual Walk ‘n Roll-athon Sports World (VSW), the official sports fair of the
Date: Saturday, Oct. 5, 2019 11am-4pm Vienna City Marathon
Location: St. James’ Episcopal Church, (VCM). Thanks to the
37051 Cabrillo Drive, Fremont, CA 94536 hard work of 4 of my
students and 15 helpers
(corner of Cabrillo & Thornton)
to organize and construct
Registration: $15 (covers lunch) a professional looking
Contact: Linda Gentner, (510) 651-5676 display, they were able
E-mail: lindagentner83@gmail.com to speak to thousands
of people, sell t-shirts,
This is a virtual Walk ‘n Roll-athon. Start getting your make potato stamps with
sponsors now (or donations) to support our effort. kids and solicit donations
If interested, you can tour the 150+ year-old “Little to fund HSP and PLS research in Europe. We not only
had a stand at the VSW, the students also organized a
Church” that is on campus (a very short distance).
group of 55 volunteers that helped at the Vienna City
Bring your family and friends. Marathon, April 7th, by serving runners
This will be the 18th year that we have met and re- energy drinks, water and small treats at
connected. Our prior connections met for a weekend the refreshment stations along the route.
starting with Friday night dinner at a hotel. Out-of- This year, we raised a total of €3,068
towners stayed overnight. Saturday, we met for a real ($3,486 US).
TeamWalk followed by a lunch and raffle for partici- The concept of Potato Pants was
pants, friends and family. After so many years, we developed in 2014. It demonstrates to
shortened our Connection to one-day event with lunch able-bodied persons, with little or no
and our annual “Share and Compare” discussion. At knowledge of HSP or PLS, what walking
this time, we form a circle and share and compare how is like with these two diseases. Since then, Potato Pants
has helped raise over €31,000 (more than $35,000 US)
we have progressed, or not, over the last year and offer
because it has been done in Italy, Scotland, England,
tips to cope or just share our PLS or HSP stories. We the United States and Austria. It is a call to action for
also have a raffle and we ask participants to bring an people to get busy and raise the money that will fund
item or two to raffle off – this is our annual fundraiser. the research to find a cure. It doesn’t matter where
Our theme is still “TEAMWALK for Our Cures” but the research is performed as the development of better
now it’s a “Virtual Walk.” treatments and even cures for these rare diseases will
IF YOU CAN’T JOIN US, PLEASE CONSIDER benefit HSPers and PLSers world-wide.
DONATING at sp-foundation.org and stipulate CATW Please go to our website to learn more about Potato
in the “honor of” space. Pants and what you can do to get active in order
to help fund research to find a cure. www.bit.ly/
potatopantsonline
Submitted by Lori Renna Linton, HSP. Lori is from
New York and has lived in Austria with her 2 children
for 17 years where she teaches English to “fantastic
students in grades 5 through 12.” She was a featured
presenter at the 2016 Annual Conference in Chicago
and then spoke at one of the break-out sessions at the
2017 Annual Conference in Atlanta. Both times her
subject was Potato Pants.
6
2019 SPF Annual Conference
Hilton San Antonio Airport
611 Northwest Loop 410
San Antonio, TX 78216
(210) 340-6060
KRIS BROCCHINI
Kris was diagnosed with
PLS at UCSF in June 2003.
After looking up PLS on the
internet, she found the SPF
and made plans to attend the Each patient with a rare disease is a patient who needs
Lexington, MA, Conference
to be heard and who deserves to be treated. And that
and TeamWalk in late
is why Saol Therapeutics exists. We bring therapies
September 2003 where she
for these serious and often life-threatening conditions
and her family were welcomed
with open arms. Questions were answered, stories to market and to the life of the patient who desperately
were compared and a whole new world to think about needs it. Addressing the needs of patients with rare
was discovered. Frightening but informative. She diseases and under-served neurological conditions are
thinks everyone needs to attend that first conference. our passion and focus at Saol. Supporting patients with
Kris served on the SPF Board of Directors from 2007 high un-met needs by offering promising treatment
to 2016. Her personal support of the SPF Annual options is what drives us.
Conference for the past 9 Conferences is the result of
remembering how she felt when she first found the
SPF community.
7
8
18th Annual Conference Presenters
Peter Baas, Ph.D., is a professor in Dr. Braastad is a published author who
the Department of Neurobiology & has many years of experience in senior
Anatomy at Drexel University College team leadership, lab operations, and
of Medicine. He is also director of the R&D. He is a member of the board
graduate program in neuroscience and of directors for the Spastic Paraplegia
an NIH-funded postdoctoral training Foundation and for Cure SMA. He is
program in the neurosciences. Dr. Baas also a Member of The Human Variome
is interested in all aspects of the neuronal cytoskeleton, with Project, the American Society of Human Genetics, the
a particular emphasis on the regulation of microtubules American College of Medical Geneticists, the American
in developing neurons. In recent years, his interests have Academy of Neurology, the American Society of Cell
expanded to include the underlying mechanisms by Biologists and the Radiation Research Society. He has a
which flaws in microtubule-related proteins contribute to Ph.D. in Molecular and Cellular Biology and Biochemistry
neurodegenerative diseases. Baas is frequently invited to from Brown University School of Medicine and a B.S.
present his work at national and international symposia, and in Biology - Magna Cum Laude from the University of
has been consistently funded for three decades by federal Massachusetts at Dartmouth.
agencies (NIH, NSF, DOD) as well as private foundations Tina Croghan is a retired teacher who
with missions related to treating neurodegenerative diseases still stands by the motto that she greeted
and nerve injury. each student as they entered her classroom
Craig Blackstone, M.D., Ph.D., is with, “What we learn with pleasure, we
Senior Investigator and Cell Biology never will forget.” With a Master of Arts
Section Chief within the NINDS in Theatre and a Master of Fine Arts in
Neurogenetics Branch and Director of Directing from Lindenwood University
the NIH MD-PhD Partnership Training – St. Louis, Tina uses her performance and people skills to
Program. He received B.S./M.S. inform, advocate and fundraise for the Spastic Paraplegia
degrees from the University of Chicago Foundation. Tina has HSP and was clinically diagnosed
(1987) and M.D./Ph.D. degrees from Johns Hopkins in late 2002. She has since received her genetic diagnosis
(1994). After a neurology residency in the Harvard- of SPG7, and now looks forward to upcoming patient drug
Longwood Neurology Program, Dr. Blackstone pursued trials. Tina has been part of the SPF family since 2006 and
clinical fellowship training in movement disorders at has been the Annual Conference Chairperson for 2009 &
Massachusetts General Hospital and postdoctoral research 2013 (St. Louis) and 2016 (Chicago). She was a member of
training in neurobiology with Dr. Morgan Sheng at Harvard the conference planning committee for the 2017 conference
Medical School and Howard Hughes Medical Institute. in Atlanta and is again part of the 2018 planning committee
In 2001, Dr. Blackstone joined the NINDS, where his for the Annual Conference in Pittsburgh. Tina became a
group investigates the cellular and molecular mechanisms member of the SPF Board in 2012 and has continued her
underlying the hereditary spastic paraplegias. He is an efforts in finding a cure for HSP & PLS. Tina lives in
elected member of the American Society for Clinical O’Fallon, Missouri with her husband, Tim, and her support
Investigation (ASCI) and an elected Fellow and past dog, Thunder.
Vice President of the American Neurological Association John K. Fink, M.D., is the Director of
(ANA). He has held numerous other leadership positions the Neurogenetic Disorders Clinic at
in the ANA, including on its Executive Council and the University of Michigan, Ann Arbor.
Professional Development Committee, and as Director of He’s also a Professor in the university’s
its Translational and Clinical Research Course and Chair Department of Neurology and is a
of its Web Governance Committee. He currently serves on Physician Scientist at the Geriatric
the editorial boards of the Journal of Clinical Investigation Research Education and Clinical Center,
and the Journal of Neuromuscular Diseases. He received Ann Arbor Veterans Affairs Medical Center. His research
the NIH Director's Ruth L. Kirschstein Mentoring Award interests are analysis of inherited and degenerative disorders
in 2012. of the nervous system (including hereditary spastic
Corey Braastad, Ph.D., is the Vice President and General paraplegia, primary lateral sclerosis, inherited movement
Manager of Genomics at Covance Drug Discovery, part of disorders, schizophrenia) and regulation of neuronal
LabCorp. Dr. Braastad has completed training, performed development. Dr. Fink received his M.D. from the Medical
research, and developed programs in clinical trials, pharma College of Ohio in Toledo. He did his residency training
research support and clinical genetic diagnostic products. Continued on next page
9
in neurology and genetics at the University of Virginia, local, regional, state, federal, and multi-
Charlottesville. At the National Institutes of Health in state organizations involving many
Bethesda, Maryland, he did a post-doctoral fellowship in areas such as tourism, health and social
the Developmental and Metabolic Neurology and Medical services, transportation, and economic
Genetics departments. development. He has been dealing with
adult onset HSP since 2002. About a
Frank McKeowen is the President of
dozen members of his family over the past
the HSP Research Foundation, Inc. in
three generations have dealt with HSP.
Australia, a position he has held for 9½
Greg holds a Bachelor’s Degree in Political Science and
years. The HSP Research Foundation is
Business Administration from Murray State University and
an incorporated, registered Australian
a Juris Doctorate Degree from the University of Kentucky.
charity that facilitates and funds research
He lives in Mayfield, Kentucky, with his wife, Norma, who
to find a cure for Hereditary Spastic
also serves as SPF Co-Executive Director. They have three
Paraplegia - an inherited, degenerative disease affecting
children and five beautiful grandchildren.
mainly the legs, causing muscle weakness, spasticity and
severely impaired walking. It is also the community hub Mark Weber, Esq., is one of the co-
for about 1,700 HSPers in Australia, creating awareness and founders of the SPF and was its first
providing support and education. The role of the Foundation president. He serves as the SPF’s legal
involves close working relationships with researchers and counsel and chairs its research grant
clinicians and support of the financial and management committee. Mark is an attorney and
demands of sponsored research, while maintaining an served for eleven years as a prosecutor
informed and motivated HSP community from whom in Massachusetts. He is currently in
most of the funding comes. Global partnerships and private practice in Connecticut concentrating in child abuse
collaboration with researchers and other spastic paraplegia and neglect cases. Mark has been diagnosed with HSP. He
support groups is also an important strategic element. For lives with his wife, Andrea, in Sherman, Connecticut, and
more information on the HSP Research Foundation, visit has a son in college.
its website at http://www.hspersunite.org.au/.
Conference Leaders
Hiroshi Mitsumoto, MD, DSc
Frank Davis, SPF President, frank.
is a Wesley J. Howe Professor of
davis@sp-foundation.org, Frank was
Neurology at Columbia University
President of Pittman and Davis, a direct
Medical Center and the Director of the
marketing catalog company specializing
MDA/ALS Clinical Research Center
in the sale of gift packages of fresh fruit
since 1999. In 1968, he graduated from
Toho University School of Medicine, and other perishable gift food items
Tokyo. Beginning in 1972, he pursued further medical before his retirement. From 2005 to
and neurology training at Johns Hopkins University, Case 2011, Frank served as secretary for the Board of Directors.
Western Reserve University, Cleveland Clinic, and Tufts He was elected president in January of 2012. He holds
University. In 1983, he began working at the Cleveland a bachelor’s degree in both business administration and
Clinic as the Director of the Neuromuscular Section and ALS sociology from Trinity University and a master’s degree
Center. He has since been involved with extensive research from Southern Methodist University. Frank has HSP and
in ALS, including improving patient care/management lives in Harlingen, Texas.
and end of life issues, multiple clinical trials, biomarker For the last twelve years, Tim Croghan
development, and multisite epidemiological studies. He has been a dedicated supporter of the
organized several large national and international ALS Spastic Paraplegia Foundation. He and
Conferences and is currently updating and developing his wife, Tina (an SPF Board Member),
the new International ALS Clinical Trial Guidelines. He focus all of their attention on advocating
has published more than 170 articles in peer-reviewed and raising funds to advance the research
journals, mostly in ALS, in addition to reviews, chapters, efforts to find a cure for HSP and PLS.
and books. For more than a decade, his research interests Tim has continued using his communication skills in
have expanded to PLS. assisting with the operation of the SPF Annual Conferences
Greg Pruitt, Esq., SPF Co-Executive Director, served in St. Louis (2009 & 2013), Chicago (2016), Atlanta (2017)
26 years as Judge Executive, administering all facets of and Pittsburgh (2018). Tim will again be the Master of
county government in his home county. While functioning Ceremonies at the 2019 Annual Conference. He is excited
in this capacity, he served on and chaired a number of about seeing everyone this June in San Antonio.
10Overflow Hotel Information Tour the Alamo. Journey to the heart of downtown San
Antonio to find the Alamo, the cradle of Texas liberty.
Thank you for booking your hotel stay early for the 2019 Originally a Spanish colonial mission, the Alamo is where
SPF Annual Conference in San Antonio. The conference 189 Texas defenders held 4,000 Mexican troops at bay for 13
Hilton Hotel has closed the block of rooms, as they have days in their claim for Texas independence. Located at 300
generously overbooked the block. A new overflow hotel Alamo Plaza, San Antonio, Texas 78205, Peak Season (May
has been secured at the San Antonio Marriott Northwest, 25-Sept. 3) 9a.m.-7p.m. (210) 225-1391, www.thealamo.org/
3233 NW Loop 410, San Antonio, TX, 78213-2866, (210)
377-3900, only 3.5 miles from the Hilton. Both hotels will Stroll along San Antonio’s famed River Walk. Wheelchair
provide shuttle services to and from the Hilton during the accessible and elevators are located along the River Walk.
conference. Conference special room rates at the Marriott An urban oasis that winds its way through the city’s central
business district, offering visitors respite from street-level
are the same as they are at the Hilton. If you are planning
activity. Meander the paths through quiet, park-like areas
to attend the Annual Conference, please call ASAP to book
that lead to European-style passages with sidewalk cafes,
a room at the San Antonio Marriott Northwest. The link
galleries, boutiques and nightclubs amid high-rise hotels.
to book rooms using Marriott’s website is Book your
The San Antonio River Walk is 15 miles long including the
group rate for SPF 2019 ANNUAL CONFERENCE. A
Downtown, Mission and Museum Reaches.
friendly reminder, the last opportunity to get a discount on
conference registration fees ends on May 31, 2019. Cruise on the San Antonio River, or arrange a dinner cruise
on the River (arrangements may be made by any restaurant,
full-service hotel or caterer). You’ll always remember having
dinner on the river. River cruises provide the best view of
the River Walk and reservations can be made to dine aboard.
Choose catering from many great San Antonio restaurants.
GO RIO Cruises, 202 E Nueva St., San Antonio, TX 78205,
(210) 227-4746, https://www.goriocruises.com/
Morgan’s Wonderland and Morgan’s Inspiration Island!
Both ultra-accessible™, non-profit parks in San Antonio,
Texas, were designed with special-needs individuals in
mind and built for everyone’s enjoyment in an atmosphere
of inclusion. Named in 2018 to the "World's Greatest
Places" list by TIME Magazine. Located at 5223 David
Edwards Dr., San Antonio, TX 78233, (210) 495-5888,
To Do While in San Antonio https://www.morganswonderland.com/
San Antonio is steeped in deep Latino roots, as well as a
fusion of many cultures that have shaped the city today. Other Must-See Places Include:
This blending is evident in cuisine, architecture, music, • Visit Main Plaza and San Fernando Cathedral, the
special events, plazas, presidios, museums and missions.
oldest continually operating cathedral sanctuary in the
With its colorful history, Texas hospitality, cultural
United States.
diversity, contemporary art and historic architecture, San
Antonio is an excellent choice for a getaway. Plan ahead for • Lunch and shopping at Market Square, the largest
a wonderful San Antonio experience. Visit the suggested Mexican Market outside of Mexico.
itineraries at this link: http://tourism.visitsanantonio.com/
english/Trip-Ideas-Itineraries/Itineraries • Tour Mission Trail and enjoy the beautiful Spanish
Colonial Missions. The largest is Mission San Jose,
Before visiting the River Walk, download maps that show known as the “Queen of Texas Missions.”
the location of ramps, elevators and accessible paths from
the City of San Antonio’s website. Often the most direct • Visit the San Antonio Zoo, the third largest zoo in the
route is street level followed by an elevator. https://www. United States.
sanantonio.gov/DAO/Publications-and-Maps/River-Walk-
• Lunch at the San Antonio Botanical Gardens. Then
Maps-and-Accessibility
tour the gardens and learn about the native flora and
Some Places to Visit: fauna of Texas.
At the IMAX Theatre, watch a showing of “Alamo – The • Visit the Institute of Texan Cultures, HemisFair Park
Price of Freedom”. AMC Rivercenter 11 Theatres, located and the Tower of the Americas.
at 849 E. Commerce Street, Suite 800, San Antonio, Texas
78205, (210) 228-0351, https://www.amctheatres.com/movie- • Enjoy dinner and a live theatre experience at the historic
theatres/san-antonio/amc-rivercenter-11-with-alamo-imax. Majestic Theatre or the Empire Theatre.
11General Interest
Cane or No Cane? avoid depression. It could be just a
A Public Service Announcement by Jackie Wellman
brief post on social media. Share a
photo. I’m not asking you to post a
Once you start asking yourself that question, it is picture of your face. Some of us are
probably past the point when you needed a cane. I camera shy. Post something silly—
have been there and now realize that using a cane like a picture of your feet.
makes sense. Having a broken ankle or arm is much
Drop a line to your State Ambassador—just to say,
worse than being seen with a cane.
“Hi.” Don’t know who your ambassador is? Look here:
For years I thought I was fooling everyone I saw. I just https://sp-foundation.org/news-resources/directories/
figured no one but my close friends and family knew state-ambassadors.html
something was wrong. On a visit to my brother’s Being a former high school teacher, when I retired,
house in Seattle, I realized how stupid I was being. I received a gift. One of my former students, whose
He had a full-length mirror at the end of the hallway. name I forget now, knew my love for quotes (I have
After watching myself walk, I thought, “Who do you them all over) and gave me a framed quote by Maya
think you are fooling?” It was obvious! I walked like Angelou. It reads, “I’ve learned that people will forget
I had a few drinks too many. what you said, people will forget what you did, but
When I got back to Des Moines, I went to the medical people will never forget how you made them feel.”
supply store and purchased “it.” I drove to a mall I use this quote to remind myself that, when I don’t
across town, where there was no chance of running hear back from my email or get participation, I just
into anyone I knew, to take it for a “test drive.” Lo need to remember that I never know who needs my
and behold, nobody stared at me. In fact, I got none of communication right now.
those looks of anger or pity from other folks thinking Now it’s your turn!
I was drunk.
KoolKape
Where Are You?
Hi friends, I recently attended The Abilities Expo in
By Tina Croghan, Missouri State Ambassador, SPF
Toronto, Canada. While there I discovered a new cape
Board Member
called a KoolKape by Koolway
“I have sent out numerous emails. I receive little to no Sports. Koolway Sports
response.” This is a common complaint among State designs outerwear for people in
Ambassadors. At times, I doubt myself. Am I being motion, especially those who
heard? Am I inspirational? Why don’t I hear back? use wheelchairs and scooters,
Why can’t I get more participation? enabling them to achieve their
Having HSP, I know that sometimes it’s easier to just maximum level of independence
stay home where I know where everything is. I know in all aspects of life. The quality
how to maneuver around. I have grab bars where I of construction and the visibility
need them. I can wear comfy clothes—that’s easy to you have while wearing their
access quickly for those urgent bathroom emergencies. Donna flanked by
John (l.) and Jenny
products are wonderful! Most
The bathroom is close by and it’s the right height! of their products are available
To top it off, I don’t drive. I’m dependent on someone in sizes for children and for adults. If you are
else’s schedule. They have to lift my rollator out of interested and want to learn more, visit their website
the car (I’m not strong enough to do it) or they have to at koolwaysports.com. Jenny and John will custom
put my scooter together. Plus, there needs to be room design for you. It's fun to share what works! In
for Thunder, my service dog! motion with all of you, I am Donna Woodhead (I’m
Well that explains the lack of participation, but it doesn’t not affiliated with Koolway Sports).
address the lack of communication. Communication,
for someone with HSP or PLS, is a vital avenue to
12A Synapse Archive • The senior editors of Synapse were:
Joe Alberstadt, June 1997 – June 2000 (he
By John Staehle, Senior Editor, Synapse
preferred the title, “Messenger”)
When I was compiling the responses to the Synapse Mark Weber, June 2000 – Summer 2002
Survey, I saw there were more people who read old
issues of Synapse than I had expected. That got me to Thurza Campbell, August 2002 – Winter 2011
thinking about how far back we had copies of Synapse (None), Spring 2011
issues. After all, the Spastic Paraplegia Foundation Beth Anne Schulz, Summer 2011 – Spring 2012
was incorporated in the State of Massachusetts on Annette Lockwood, Summer 2012
January15, 2002, so there ought to be newsletters that
at least go back to 2002. I checked the SPF website Allen Bernard, Fall 2012 – Fall 2013
and the oldest issue available there was Spring 2014. John Staehle, Spring 2014 – Present
I started to track down back issues of Synapse, • The Synapse banner on each issue stated “Serving the
hopefully all the way to 2002. Thanks to Jim Sheorn, Primary Lateral Sclerosis Community since 1997”
Annette Lockwood, and Jim and Thurza Campbell, until the Winter 2004 issue when, “Welcoming the
for keeping CDs, old hard drives and files buried in SP Foundation since 2003” was added.
folders on home computers. With their help, I was • In January 2008, Synapse was named the official
able acquire PDF files of Synapse newsletters back newsletter of the Spastic Paraplegia Foundation.
to the Autumn 2002 issue. Newsletters from August
2002 through Autumn 2007 were created in Word and • The first issue to be published by Gulf Business
had to be converted to PDF files for the archive. Jim Printing in San Antonio was January 2008. They
Campbell also found one issue each from 2000 and have published every issue of Synapse since.
2001. As of this writing, the Synapse Newsletter page on
the SPF website now has links to issues from January
Here are some of the facts I discovered along the way:
2008 to the most recent issue, Winter 2019. There
• [Synapse was] “Established in June of 1997 by are 23 additional issues from Autumn 2000 through
Joe Alberstadt for people with Primary Lateral Autumn 2007 that will soon be added to the page. I
Sclerosis, and their loved ones.” [From the
will continue to track down additional copies of back
September 2000 newsletter header]
issues, if any still exist. By the time you read this, the
• Joe Alberstadt explained why “Synapse” was Spring 2019 issue will have been added to the Archive.
chosen as the name of the newsletter: “Synapse When the oldest issues have been added, take a look at
means a means of connecting, and in so doing, the stories in those issues and you will see that some
nourishing the subjects (neurons) that are being are just as relevant today as they were then. Others are
connected by the mere fact that there is a synapse just downright interesting!
(a sort of connecting or communicating) taking
place. -- William G. Figueroa, M.D. Relate this
to our interactive communication support group,
and it’s no wonder the name for our interactive
communicating letter is befittingly called
SYNAPSE. By interactive discussions, we can
help each other. Neglecting to communicate can
contribute to our attitudes, incentives, hope and
spirits dying. Let's keep these attributes alive
through SYNAPSE. Thank you. Joe Alberstadt”
[From the September 2000 newsletter header]
• The early newsletters were printed and mailed Please consider making a gift to
monthly to a comparatively small number of the Spastic Paraplegia Foundation
recipients.
in your Will and Financial Plan.
13Medical & Research
Surgical Anesthesia in HSP and PLS their muscles for several days or even a few weeks!
By Malin Dollinger, M.D., SPG4 Persons with PLS were especially vulnerable in
this situation because their condition often includes
Recent chatroom discussions have uncovered a involvement of the nerves at the base of the brain
frequent lack of awareness of special anesthesia which control swallowing and breathing, both of which
requirements in patients with HSP and PLS. This could be affected by the long-acting muscle relaxants.
discussion is to set down medical information and “Life support” might be needed in that situation until
comments about anesthesia and to offer references in the muscle relaxant wears off. Other topics regarding
the anesthesia literature that you can download and surgery in people with HSP or PLS were offshoots of
give to your anesthesiologist. Anesthesiology is a the above discussion. For example, how to improve
complex science, not just “putting someone to sleep leg muscle rigidity and tightness which might interfere
for a few hours,” and a lot of research has been done with the planned surgery. A Synapse reader told me
and is continuing. about receiving Botox injections in her leg muscles, a
First, a brief classification of types of anesthesia: splendid solution to enable proper surgical positioning
General anesthesia means you are “sound asleep” without the "tight legs” getting in the way. I once had
and unaware of anything, including what would prostate surgery and they couldn’t hold my legs apart.
otherwise be painful such as surgical incisions and Finally, a nurse on each side held each leg outwards
cutting. In the “old days” this was a lengthy process, during the entire operation.
for example using open drop ether (used when I was Now here are some details for you, and especially for
six years old and underwent surgery). Later, things your anesthesiologist, with some references you can
like sodium pentothal and lately, very effective agents download, print and give to her or him. These “pearls
such as Propofol are being used where you both “go to of wisdom” are from scientific/medical articles mostly
sleep” and “wake up again” in a very short time span. written by anesthesiologists who deal with such matters
General anesthesia is the form of anesthesia which every day. That’s the purpose of publishing medical
especially concerns us, not because of the anesthetic research, so other physicians and their patients have
agent, but with the muscle relaxants commonly also the benefit of new and important advances in medical
used. Regional anesthesia will anesthetize only a care. Suppose a doctor discovered a new antibiotic
part of the body, for example a spinal anesthetic for that worked against antibiotic-resistant bacteria.
surgery on the legs, e.g. a hernia, local anesthesia Wouldn’t it be vital, and sometimes life-saving for her
for smaller areas, using the same type of anesthetic to publish that information so we could all benefit?
as the dentist, and other types of regional anesthesia, So here we are, about to discover and review what the
where larger nerves, e.g. in the chest, are numbed anesthesiology researchers have to say about giving
by local injection of anesthetic agents. Then there anesthesia to persons with PLS and HSP.
is “conscious sedation,” also called “twilight sleep,”
where you are given intravenous drugs that make you The following section is intended to be printed and
unaware of your surroundings, but you can follow given to your anesthesiologist at least several days
simple directions. It was often used for GI procedures before surgery and not the night before or the morning
such as colonoscopy, but nowadays Propofol is often of surgery. I’ve quoted exact excerpts from some of
used, since it works so fast, so well, and wears off the scientific articles and have not tried to edit out or
so quickly without major side effects such as nausea translate the “doctorese.” Your anesthesiologist needs
and vomiting, both of which are problems with older to hear the important message from the anesthesiologist
anesthetics. who wrote the article using the correct medical
language. These are for your direct benefit, thus better
This topic became vitally important when people with if exactly quoted. Print the following, including the
HSP or PLS were given general anesthesia along with references, for your anesthesiologist.
a long-acting muscle relaxant, such as succinylcholine,
and unexpectedly became weak and unable to work
14From the paper authored by J.A. Franco- Hernández, anesthesia was reliable and effective, she had Little or
et al. (see reference 3), the use of neuromuscular no pain postoperatively, and received no opioid pain
blockers is complicated in patients with familial medication.
spastic paraplegia. Succinylcholine is contraindicated Olmez and Topaloglu reviewed various reported types
since it may induce hyperkalemia, and there should be of anesthesia in HSP patients.
caution in the use of non-depolarizing muscle relaxants
due to the risk of exaggerated muscle relaxation. The Kunisawa et al used nitrous oxide, oxygen and
literature sources have not shown whether regional sevoflurane anesthesia in an HSP patient, and there
anesthesia exacerbates the neurological symptoms. were no anesthesia problems (article in Japanese)
However, regional anesthesia is not always possible. References discussed:
Therefore, general anesthesia with non-depolarizing 1. Thomas, I., et al. Spinal Anaesthesia in a Patient
neuromuscular blockers would represent a safe with Hereditary Spastic Paraplegia: case report
alternative - particularly considering that there are and literature review. International Journal of
drugs offering rapid and safe reversal of muscle block Obstetric Anesthesia. Vol 15: Issue 3, 254-256,
induced by rocuronium and vecuronium. In our two 2006
patients we chose general anesthesia because of the
2. Dizdarevic, A and Fernandes, A. Thoracic
duration and complexity of both operations.
Paravertebral Block, Multimodal Analgesia,
Great care is required at extubation in patients with and Monitored Anesthesia Care for Breast
FSP, particularly if neuromuscular blockers were Cancer Surgery in Primary Lateral Sclerosis.
administered during the operation. If possible, long- Case Report in Anesthesiology. Vol 2016,
acting neuromuscular blockers should be avoided, Article ID 6301358, 4 pages. http://dx.doi.
with routine monitoring of neuromuscular relaxation org/10.1155/2016/6301358
throughout the operation, using a standard peripheral
3. Franco Hernández, J.A., et al. Use of Sugammadex
nerve stimulator. A TOF ratio of over 0.9 must be
in Strumpell-Lorrain disease: a report of two cases.
confirmed before awakening, accelerating patient
Revista Brasileira de Anestesiologia. Vol.63 No.1
recovery with neostigmine or drugs that selectively
Campinas Jan/Feb 2013
bind aminosteroid neuromuscular blockers, such as
sugammadex. 4. Olmez, A. M.D. and Topaloglu, H. M.D.,
Hereditary Spastic Paraplegia / Anesthesia Post
Although the anesthetic management differed between
11.01.2012
the two operations (Total Intravenous anesthesia versus
inhalatory anesthesia), agreement existed regarding http://www.medmerits.com/index.php/article/
the choice of muscle relaxant, i.e., rocuronium, due hereditary_spastic_paraplegia/P13
to the possibility of antagonizing its effects with 5. Kunisawa, T., et al. Anesthetic Management of a
sugammadex. Functional deficiencies being similar to patient with Hereditary Spastic Paraplegia. Masui
those prior to general anesthesia, subsequent follow- 2002;51:64-66.
up of both patients revealed no significant worsening
Your anesthesia may be local, regional, or general,
of neurological signs.
but in any event, a knowledgeable and expert
Conclusion: The main interest of our study is that both anesthesiologist can create the same low risk of
patients were subjected to general anesthesia, with the anesthesia as in people without HSP or PLS. Examples
use of a specific reversal agent for non-depolarizing have been given, and especially important is the
neuromuscular block, followed by complete recovery avoidance of the use of long-acting neuromuscular
and no worsening of the existing neurological disease. blockers, such as succinylcholine. There are other
Thomas, et al reported use of spinal anesthesia, in special measures for HSP and PLS patients, such as
connection with an obstetric procedure, and spinal ways to “line up” crooked broken bones so they will
anesthesia worked well and normally. heal properly using traction and Botox injections for
a leg or arm fracture or using local Botox injections
Dizdarevic and Fernandes used a paravertebral nerve
where a part of the body needs the spasticity reduced
block and multimodal [several types] anesthesia
for the surgery. Continued on next page
for breast cancer surgery in a PLS patient. The
15I suggest you copy this entire article to give to your to contact more people with all HSP genes for these
anesthesiologist [or surgeon for transfer to your genetic companies to decide which HSP gene is the
anesthesiologist] at least several days prior to your next rare genetic disease they want to cure.
surgery. Of course, you will undergo the usual We are currently making a big effort to reach out to
preoperative screening for everyone undertaking neurologists nation-wide to ask them to please inform
surgery, including checking for heart or lung disease, their patients with HSP and PLS about the Spastic
blood clotting abnormalities or any other medical Paraplegia Foundation. I encourage you to advise
issues that need to be known and dealt with to make your family members who are not current members
the contemplated surgery as safe as possible. of SPF to please enter their contact information on
our website. Since all family members with HSP are
going to have the same HSP gene, sometimes they can
Why Getting A Gene Test Is So
get together and split the cost for one of the members
Important to get their gene tested. Then other members of the
By Frank Davis, SPG4, President, Spastic Paraplegia same family who don’t know yet whether or not they
Foundation have HSP can get tested for that one same gene for
about $100.00. You can’t beat that!
If your family is anything like mine, you have all sorts
of family traditions that are just part of who you are. The cost of finding out what gene you have is coming
HSP is a family disorder and so is often part of certain down all the time. Right now, there are different gene
family traditions. One of those unfortunate traditions tests that target different groups of genes at different
is the belief that, “HSP is just part of our family; it will costs, but it shouldn’t cost you more than $1,200.
never be cured; it is too expensive to find out what Probably a lot less. If you participate in the CReATe
gene I have and there isn’t anything we can do about project, with sites throughout the U.S., you will get
it”. Let me tell you, friend, that our Foundation and your gene determined for free. Contact information
modern science is certainly kicking that tradition right for different gene testing companies and the CReATe
out the window! We need your help to continue to do project is on our website www.sp-foundation.org [see
so! the Editor’s Note below]. When you find out your gene
or if you know it already and haven’t told us, please go
Scientists and genetic companies, both large and
to our website and enter your contact information and
small, using such new genetic technologies as CRISPR
gene by clicking on the picture of the linked hands on
are popping up all over the world almost every day.
the first page. Remember: Alone you are rare, together
They are coming to me and our Board of Directors to
we are STRONG!
consider whether or not to apply their efforts and delve
into actually curing HSP. They are currently curing [Editor’s Note: There are resources available on the
many genetic blindness diseases and making strong SPF website to help you select a company to perform
efforts in the cure of Duchenne muscular dystrophy your genetic testing. On the SPF home page, select
and other rare genetic diseases. Resources, then Helpful Employment, Genetic Testing,
Travel and Relationship Links, and Genetic Testing
They ask us how many people in the US have each
Links. There you will find links to several sources for
gene and how many we can contact. They don’t want
genetic testing and an Excel file that compares what the
to put the expense and effort into trying to cure a gene
various genetic testing companies offer and the cost of
when there aren’t enough people with that gene for
each test. I recommend you contact those companies
them to work with. For instance, SPG4 is the most
for their current testing costs as test costs continue to
common HSP gene. Scientists estimate that there are
decline. To access information on the CReATe project,
over 10,000 people in the United States with SPG4
click on Resources and select Current Studies Seeking
HSP. In our data base, we only have 167 people in the
Participants.]
U.S. with SPG4 HSP. However, there are over 2,600
people in our data base with HSP that don’t know what
specific HSP gene they have. Finding out our genes
can open huge doors for all of us. We need to be able
16Living with HSP / PLS
Travel Turmoil see if it was repairable or if they had to replace it. We
both knew replacement was needed, but we were quite
Compiled by Malin Dollinger, M.D., SPG4
nice and agreed with her. I told her to not worry just
This installment of Travel Turmoil recounts the so I would get a replacement similar to the one that
troublesome travel experiences of Carol Barta and her was damaged. A mobility company they work with
husband, Randy, and those of Bob Gustafson. They sent me photos of three options from which I could
also offer solutions to what otherwise might have choose a replacement chair. We live in Texas where a
discouraged future travels. plastic seat wouldn’t work, so we chose a chair with a
Carol was thought to have PLS at first, but then found nylon seat. We had them ship it to my parents’ house
she had “Stiff Person Syndrome” that was affecting (near our home) and we would pick it up from them.
her lower body. It is also an upper motor neuron We got there and all was well. What we learned is
disease with many similar symptoms as HSP and PLS. DO NOT check your personal wheelchair at check-in,
Consequently, the solutions she presents are likely to GATE CHECK IT instead. That way it will be waiting
be applicable to the rest of us. Here is her story. at the gate and should be in better condition.
“One of our first flights with my wheelchair. I had “Cruise Lines. We have taken a couple cruises and,
gotten by with my walker and all was well. But now in each case, the crew was wonderful to someone in a
the disease/anxiety/stress has gotten worse so I use wheelchair. It's the tourists on board that can be rude.
a wheelchair 99% of the time when I am in public One time I got out of my chair and, with the help of
places. I cannot walk if I think someone is watching a friend, struggled up one flight of stairs while my
me. My left leg doesn't bend at the knee and if I get husband carried my wheelchair. People watched me
really stressed, both legs are straight. We took a trip struggle and just kept on going without even asking if
with Southwest Airlines. Before we left, I ordered we needed help. The cruise line personnel (we always
two really nice canvas bags that have drawstrings for cruise Princess ships) are always very, very nice and
closing the open end. Then I bought a handicapped helpful. The nice thing about a cruise is you only
sign stencil and some blue paint. I painted the sign on unpack once and then travel from location to location
both sides of each of the bags and used them to check for sightseeing day trips. It's really great! You do
my wheelchair and walker at check-in. I transferred have to book early if you need an accessible room -
to one of the airline’s they have a limited number on the ship.
wheelchairs while at “I have found everyone is very nice and helpful if you
the airport. don't create a problem. I understand I could ask for
“When we arrived special treatment, but I don't. I just explain I can't
at our destination, walk or stand without holding onto grab bars and have
the bags were on not had any problems so far. This summer will be
the baggage claim interesting as there are 8 of us going to Ireland. This
conveyor belt and will be my first time for an overseas flight but we have
not at the oversized an aide going with us as well as two other couples and
baggage claim area as another lady that can help my husband.
they were supposed “I did purchase a wheelchair seat belt for the
to be. My husband cobblestone roads and hilly areas we will be visiting.
took the scratched I don't want to fall out of the wheelchair if we hit a
and dirty canvas bag off the wheelchair and…Oh bump!
my…it was badly bent and mangled. Thank goodness
“Traveling is stressful enough and I try to make it as
my walker was okay since I cannot replace it with
the exact same one any longer. Southwest was very easy as I can on my husband and travel group (if we
helpful. The lady apologized and started filing a claim. have one). Being nice and thanking people really goes
She said I could use their loaner chair for the week we a long way, even though some of the people really
were going to be there and they would send mine to Continued on next page
17You can also read
